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Thursday, November 17, 2011

Vent

Susan Skoney

Are you tired of having MS? I am. I’m so tired of it I want to scream. Or at least vent, which is why I came up with the idea of venting regularly for the Society.

Let me tell you about one recent event that almost tipped me over the edge. My 18-year-old son Alex injured his eye at work—landscaping, OMG, with a stick! It was something mothers everywhere dread— the poked-eye situation. So I knew he had to be seen by a doctor right away. Off we went to an emergency care facility with my son holding an ice bag to his face with one hand and pushing me in my wheelchair with the other.

The triage nurse said, “So, what kind of problem has you in a chair?” I replied, “MS.” She started asking me all about me, while ignoring my now-squirming son with the ice bag. I redirected her to him and she showed us into an exam room.

The next nurse comes in, sees me in the wheelchair and wants to take my vitals. I redirect again to the kid with the bad-looking eye and the ice bag lying on the exam table. Finally, the doctor comes in. This time, I was ready. He looked at me. I promptly announced that I was perfectly fine, but my son ...

End result: My son was not blinded, I still have MS and I still really wish I didn’t. A sharp stick in the eye and having MS are both bad. But venting is good!

What’s happened to you recently that makes you tired of having MS? Stay tuned for more vents.

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

Ok I don't have MS unless you count that when a loved one has it we have it. My wife was diagnosed 16 years ago and now is secondary progressive. My thing is seeing her in her chair and being invisible to others around her...they walk in front of her and sometimes almost trip over the chair.

I am loosing the feeling in my left side and just found that when I nikked myself shaving my left leg there was no burn or sting feeling... no wonder I am starting to fall alot. Thankfully I am only using a cane and I am sorry for those of you that is in a wheelchair (not far behind you I am afraid

I learn something new everyday. Yesterday, my hand didn't want to hold my pen, the day before I had the 'Drag, Stomp Shuffle'. Last week I learned that my left side of my body is less sensitive to heat after constantly checking my bath water with my left hand, only to dive in a near scalding tub. ( I am more a shower type)

Glad your son was ok! How ridiculous that just because your in a wheel chair they automatically assume that it was you that had a problem. Great idea with venting!! I think it's great to get it out! There isn't anyone 'physically' around me that has MS.. so alot of times I feel as if no one understands. During a relapse I had to use a cane.. I'd lost 75% usage in my right leg. There were people that would give me that look. I hated it & it's so frustrating!

I recently had surgery on my right knee. Because of my MS the pain is unbearable. I had to call the doctor and explain to them that I have MS so I needed a stronger pain meds to deal with the pain during recovery from surgery. I was in tears the pain was so bad. Why do I have to explain to the doctor that I am going to be in more pain because of my MS. I want to scream and cry all at the same time because I am so tired of explaining the pain to doctors who should already know about it and how bad it can be.

First of all, let me say, thank you for this. I think it's good to commiserate with others in the same situation and get it all out. I also have fibro and there are a few sites that let you vent, too.

To comment on your original post - As a mother of 3 (2 of them boys), I find I hold my breath a lot when it comes to injuries or anything dangerous. I'm not in a wheelchair, but my kids' drs. always like to talk to me about my health, which is good, but I often feel like a fascinating medical study to them. They often have students or other drs. observing them, and I also have other medical issues, so they parade me around like some odd exhibit at the fair. But, I try to take it all in stride.

To comment on Listening Hands - Like I said before, I'm not in a chair, but I do have to use one when on trips or other long outings when I'm feeling especially fatigued. On a recent trip to the state fair, my husband and I couldn't get over how people just walked right in front of me without looking. My hubby had to make a special effort not to hurt anyone with the chair. I'm sure some of it was the fact that the fair was so crowded, but it was still very difficult.

I just enjoy walking in the mall with my kids, and because I walk funny I get stopped by the security guard who asks me if I am drunk. It's just upsetting that people aren't more aware of this illness.

I am tired of being TIRED! It doesn't matter how much I do accomplish around the house it never gets done because I have to take breaks all the time. I just want to walk into my house and be glad to be home instead of stressing about a mess or the dust!

There are days when I am really down and feeling bad, those days I want to just hide from the world, but I work full time and volunteer full time too.(or so my husband says) I find that on those days I find my perspective by connecting with my Wounded Warriors. A dose of their humor and upbeat sense of self worth and I feel 100% better. While I struggle with walking and functioning daily, at least I have all my limbs. I walk the journey with several of my "kids" and while I hate that I have MS and all that comes with it, it is so much less than they deal with every day, together we forge ahead and support each other. I urge you all to vent , but to also reach out to each other and to those in need. Sometimes by helping others you will find an inner peace and acceptance from others who "get it."

Dakotaau - I agree wholeheartedly. I am a teacher who has had to come out of the classroom because my health issues and the work load did not mesh. I still want to feel useful and make a positive contribution, so that I feel like what I do matters. A feeling of self-worth can have a great deal of benefit. Sometimes,I think that when you're depressed you don't realize how bad it is and seeing that you're not the only one with issues can be a real eye-opener.

Well Susan, I am glad your son did not loose his sight. That was a scary accident and what followed was not neccesary. I am sorry.

I have MS, Fibromyalgia and pinched nerves and bad discs in my low back.

I truly sympathise with everyone that has MS or any of this, or other pain and chronic matters.

I especially, lately, have been having trouble with an insurance co. My Nurologist put me off work so I am on disability. The private disability my employer paid for is denying me benefits. So I am fighting and trying to get that settled.

The worst, as others have said, is that people say you look good, or it doesn't look like anything is wrong with you.

I am in pain now, as many of you are and I understand....just how do we convey to our DRs how bad we feel?

I've had MS 18 years. My 9 & 13 yr old children have never known a mom w/o MS. That's ok, but I am tired of being tired. I'm sad that my kids are used to me being tired, they should have a mom full of energy.

Aching all over, headaches, burning sensation in my feet, legs ache, pins and needles, feet always feel cold. But it could be worse. Had cancer, beat it. Still working 40 hrs a week. Use a cane to keep my balance. No wheelchair yet...but it could be worse...thats what I keep telling myself.

great idea venting with those who understand it..after 17 yrs I find the vents are still the same. I am sorry I look so good, I'm sorry you think I'm faking it all, I'm sorry yesterday I could clean walk, cook go to church and stay up pas 3 in the after noon. I think I will make a sign I DO HAVE MS NO CURE HAVING GOOD SORRY I WILL TRY AND LOOK SICK TOMORROWby the way I LOVE THE NEW PILL NO MORE NEEDLESanother one are you ok now I get this when I am in remission

I'm too tired to vent... I don't want to sound negative or wallow-y but I must say it is sooo comforting to hear my exact complaints vented by others here. It makes me feel less alone. (primary progressive MS since 1998)

I think it's hysterical that people with MS should avoid stress because it can make your ms worse. But how do u avoid stress when u r in pain, are broke, and have no insurance. I just started a new job this summer and my new insurance doesn't cover pre-existing conditions. Great I'm working my --- off struggling to just make it through each day and I can't go c my neurologist.

I'm relieved to hear that other MSers have the same issues as I do. I am in education and had stopped in a teacher's class to check on a student...looked down and my hand was bleeding. Never felt the cut because my hand is numb. I just want my normal back.

Thanks everyone for sharing. I hate that my husband feels helpless. It upsets him to see me so tired and affected - sometimes he just breaks down and there's nothing I can do to fix myself. He can't fix me, I can't fix me....and sometimes it's just absolutely exhausting for both of us.

Susan, thank you for sharing and glad your son is OK with his eye injury. I am the spouse of a secondary progressive patient. She does an awesome job of keeping in good spirits. The rest of us feel totally helpless knowing she cannot move or stand without assistance. A power chair and hospital style bed are her only choices. She does not get out of the home unless it is a doctor visit. I can understand her wanting to stay unseen due to the wheelchair, she has had a few bad depression days and gets flu like vomitting and such very easy. She gets quiet ands sometimes is afraid we are all suffering from the physical burden to help her. We have one daughter who left home and is still in college, she simply ran away from the situation. My youngest is a freshman in college and still here at home. God bless her she is our care and sunshine. There are many days of great mobility and then we get hit with the sick feeling and no mobility. We are hopng and praying for a cure, or at least a way to stop the progression. Thanks for the vent site today. My prayers are with everyone who suffers with MS. It is truly a humbling disease, but there are so many wonderful people afflicted. God bless...

I 'graduated' about 2 years ago to secondary progressive and I wish I was left behind. My symptoms first began in 1989 just intense cold sensations in my hands and the MS hug around my waist(didn't know it had that name back then). Symptoms lasted about 5 months. MS was never mentioned. I wasn't diagnosed for another 4 yrs. when the symptoms came back plus sensations in my legs. R&R was sometimes a drag but the exacerbations would end and then I felt like I could function decently for awhile. Now I tire easily and almost always need aid walking. Anything more than a block and I need a wheelchair. I think what I hate most is not being able to do things with my kids (both college aged). Things like helping them move into their dorms or apartments or traveling with them. Watching my friends and siblings able to do all those things with their kids just makes me feel cheated.

Can any one give me advise on Medicare Advantage Plans? Is it better to just do a drug plan & have regular Medicare or go to an Advantage Plan? My co-pays are never very high. So I think I only need drug plan coverage. But right now on a COD basis I can get my med for less that $125/month. BiogeneIdec provides my Avonex at no cost. I am really confused about all of this.

I first off want to say, "God bless each & everyone of you". I was diagnosed at age 19 & have had MS now for 17 years. I hate when friends or loved ones say, "don't rush". Yeah, because it looks like I'm flying at lightning speeds.

Wow! Was this ever a good idea. I'm 67, had MS since I was 15. My uncle died while in a nursing home with it because his wife couldn't care for him anymore. So much for history--EXCEPT, I am beginning to feel like I am walking in those shoes, well not really walking. I never expected it to get this bad. Where did my brain and hold on emotions go? Now, by the time I go to bed, my whole body has the 'willies' instead of just arms and legs. At any rate, thank you all so much for the chance to vent. This is wonderful!

Hate it when you see people and they say "oh dont you look well", when really if they could see inside your body they would see its a car crash!!! Tired of people chooseing to forget I have MS and thinking i can just carry on like everyone else. Its a case of if they dont think about it, then its not really happening.!!

"Crazy Grandma," you may want to call our Information Resource Center to talk with an MS Navigator about your options for prescription coverage through Medicare. Our specialists are trained to assist people with questions just like yours. Here's the phone number: 1-800-344-4867

Thank you all for venting with us. And, thank you Susan for coming up with the fabulous idea of creating a space for people to share their frustrations - it seems you've hit the nail on the head with this one!

Why am I sitting on the only seat left in this very busy shopping centre when there are people much older than me who need to rest I look fine I must just be lazy I need a sign to hang round my neck I HAVE MS I FEEL LIKE S*** AND I JUST NEED A FEW MINUTES

Ummm I forgot ( I seem to say that a lot lately) That really pisses me off. I just having "brain farts" all the time. Feeling numbness and pains that I have never had before. Wondering how long I will be able to continue to take care of my family and ride my Harley. I hate always wondering "what's next?" I'm new to this I was just diagnosed a few months ago.

It is knowing that it is going to get worse and there is nothing I or anyone can do about it. It is the inevitability that get me down, knowing in 6 months time I won't be able to do what I can do today.

I just got diagnosed very recently (as in I am in the process of wrestling with insurance to get my first attempt at the MS drugs started... rolling with Copaxone first) and I am feeling like I got hit with being a burden on everyone around me. Oh, no one says that to me. In fact, my support structure is pretty good, but I am sick of watching all this money go down the drain. I am sick of being unable to work at the level that I was able to six months ago. I am sick of having no stamina. I am sick to death of knowing that I knew a piece of information a few months ago and being unable to grasp hold of it in a conversation. I feel stupid and it is pissing me off to no end.

Yeah, venting has been helping. At least I am off of my eye-patch and I have my vision again after a run of solumedrol infusions. :D

Susan, You are from western New York? I lived in Jamestown until I was 12 years old; since I was diagnosed with MS, and then my brother and my sister were diagnosed (we all grew up in Jamestown), it got me wondering about "clusters" of incidence, and whether environmental factors unknown played a significant role. At least three friends or acquaintances from the area also have MS. A coincidence? Who knows with this ridiculous disease. right? Just wondering if you have heard of any of this.

As to clusters and the environment, I think that's a valid question/statement. I grew up in Lead, S.D. and at least 7 of my graduating class have MS (class of 172). There are clusters in other years also, I am gathering info because it interests me that so many of us in such a small town have MS. I really think it is something that should be looked into.

I am recently diagnosed at 20 years old after having two seizures. It completely ruined my college dreams at least for now. My memory is completely shot, but its like I tell anyone that wants to show me pitty it could always be worse.

ive only told a few people because i don't want the pity face but my left side is losing feeling. Im 19 years old and in my 2nd yr of college, and panicking. I don't want to lose my my ability to walk but i don't want to take medication. I hate feeling incapable and weak but im just downright lost...

Paul, I completely agree with you. I think one of the worst parts for me is being 24 years old and having a wife and son to take care of. Also wanting to have another child but being scared of how my body is going to fail me in 6 months to a year. I'm feeling weaker every day. When just a year and a half ago I was in the US Marine Corps and on the path to success. Now I'm wondering if I'm going to be able to walk and take care of my family and play with my son in a year. :( Anyways, thats just my fear of my body failing me.

Robert; Qohrah Marine! I know what you are going through, though at the time I was in the Corps they didn't know I had MS and it stayed pretty dormant for years. You are tougher on yourself than anyone else, learn to relax and de-stress, (easier said than done I know)take your meds (are your meds working for you?), listen to your body and your doctor(ask questions and don't leave until you get answers). I pray that you will be able to go pretty much full throttle, just with a few more days of recoop built in. Live life, educate yourself and your family on MS and know that there are many of us here for you. Semper Fi

Last August, my nuerologist prescribed Gilenya and I was absolutely thrilled that I could forgo taking daily injections.A few weeks ago, I had some blood work done as part of my annual physical and my white blood cell count had fallen to 2000. My doctor exclaimed, "MS can definetly effect your quality of life, but this new drug can potentially kill you!" Needless to say, I quit taking the Gilenya.Simutaneously with this, I havd found myself battling a bout of shingles for the last month. Upon further reading, I have now found that I should never had Gilenya prescribed to me because I had several bouts with shingles prior to taking it. I am passing this on to all of you who are considering Gilenya. Too bad it isn't what we all hoped it would have been- an effective and safe drug.

Diagnosed at 17 during my bday week of course. So I'm 18 and a emotional wreak anxiety fatigue speech problems. I've only been diagnosed with this for 2 months and I'm so tired already. My parents don't understand how I feel like this is my fault. It takes me awhile to think now and I do stupid things sometimes and don't think. Does anyone have advice on how to handle this and stress? I stress myself out with school and any little thing I freak out and I dnt know how to handle this.

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